Stage 4 Colon Cancer update

sammer4u

It has been quite some time since I have visited this site, mainly becuae I have been very busy.  I found out I had stage IV colon cancer November 6, 2011 at the age of 41 after finding a tumor in my colon.  They removed the tumor, gave me a colostomy and tested the tumor.  December 2011 I had a power port installed in my left shoulder area, and started chemo end of the year.  After two treatments they had to remove the power port as it was leaking emfactic fluid.  Apparently the tube was too close to the duct that carries the fluid and drained into the port tube.  When the port was accessed they would get a white milky fluid out of it and would continue to flow while accessed.  They then installed a PICC line in my left bicep.  This I was told was to be in of replacing in about 4-6 weeks.  I coudl feel everythign as they did the PICC line insertion, as the doctor admitted they may not have numbed the area enough.  But he proceeded, and after that experience I said that it had better last longer than 6 weeks as I had 10 more treatments to go.  I had a PET scan which was an experience I will never forget.  They bring the special cocktail in a cement lined box (makes you wonder a bit) and tell you after you get injected with it to jus tlie there, do not move, do not hink about anything.  And after the scan is performed, they tell you to make sure you drink plenty of fluids and stay away from pregnanet women and young chidren.  I went thru at least 7 treatments and the ocnologist determined the tumors were shrinking.  I had 6 tumors in my liver, and one actually disappeared.  After meeting with a liver specialist it was determned that I was a canidate for a liver resection.  I need the approval to move forward because of my stage and location of tumors.  My oncologist said that after the met the specialist that I woudl be a shoe in for the surgery, being that I was "young".  In the next few weeks I had numerous tests, visits to the hospital to get me prepped for the surgeries that would entail.  May 2012 I had a procedure called a Portal Vein Embolization.  The doctor went in removed a tumor on the left side of my liver, and tied off the blood flow to the right side.  This was to force the left side to grow and promte the healthy part of the liver to stay healthy.  The Portal Vein Embolization was done laproscopically, and was a quick heal time.  After 4 weeks of post surgery time, they determined the left side was doing well and growing and the next step was to be liver resection.  I went in the end of June and all went well.  I came out with a huge backwards "L" on my lower stomach area and of course sore.  I went in June 28 got out July 2.  The summer here was very hot and dry which did not help me out any.  Once home I was very uncomfortable.  They gave me some pain medicine and said I was to take a stool softner with it.  Well, we forgot to get the stool softner and found out the hardway why I was told to get it.  Rushed to the hospital for internal cramping and pain, after they gave me some Magnesium Citrate (my new firend) I was fine.  The entire time I was home I slept in a recliner.  July 7th I was waken up with pain in the incision area.  It was a Sunday and no one was available for consult but said to take some aspirn and continue to monitor the area.  Mondya July 8th I called the hospital again in pain, and redness and swelling in the incison area.  After sending a picture via cell phone to the doctor they were going to determine what they wanted me to do.  An hour later they called and said they wanted me to be at the hospital at 11:30.  It was already 10:15 and it takes an hour to get to the hosptial and I needed to find a ride in as my wife was finally at work.  I got to the hospital at 11:35, checked in and waited in the doctors office.  For whatever reason I decided to stand while waiting.  They got me in quickly and as I sat down in the doctors chair I felt a wet liquid running down my belly.  I pulled up my shirt and there was this puss oozing from the horizontal incision.  I had an infection.  I was admitted over night and pumped with antibiotics.  I was informed I coudl take a shower on Saturday after my Monday departure from the hosptial and have a feeling that is what caused the infection.  I live on a well system, and that may have caused me more inssues than just getting clean!  Anyhow, I now had an open wound that needed to be wet/dry packed 3 times a day.  Not sure how long, but had numerous visits to check out afterwards.  My final chemo treatments were put on hold.  At this point I was 9 months into my fun, and this was the very first time I decided I was done playing this game. I wanted to be done, be able to do what I wanted.  I was finally healed up enough that my chemo treatments could continue, and it was finally September.  After my 8 treatments I was able to scheudle my ostomy reversal.  That surgery took place November 16, 2012 one year and 10 days from the start of this.  After getting thru this surgery and passing some solid stool normally I was released home.  Then the long road to recovery and a normal life ofr so i thoiught.  I had a follow up with my Oncologist in mid December and things were looking good. He said to me that he had to modify a stage III scheudle but here is what we were going to do.  Follow up visits every 2 months for the first two years.  Then 4 months for the next year, and then 6 months to the first 5 years.  Then the next 5 yeasrs (a total of 10) I woudl see him once a year.  Well, none of this sank in until I went to see my surgeon as a follow up to the ostomy reversal and said that I had to have a modified stage III scheudle.  She said, yeah that does not surprise me becuase you were not suppose to be here with us.  That is when it really hit me!  Stage IV was a serious stage.  I never unitl this point in January 2013, realized what kind of battle I was going thru.  I never gave it any thought.  I just wanted to move forward and did everything the doctors asked of me.  I never once looked back.  The only time I felt down and wore out was with the open wound.  That drained me.  At that point it made me think about things a bit and realized that for 41 years of my life I made it without one surgery.  Now in the course of 375 days i had 9 surgeries.  All of which I was told was serious.  My liver specialist (now I realize what she was talking about) mentioned that she has done a "few" of the Portal Vein Embolizations and liver resectiosn on someone of my state. She never operated on anyone with more than 3 tumors.  She said that her professional opinion was that if I can stay clear for 2 years that I will be good to go!   I continue that thought today.  I was given a clear adgenda, to do whatever I want, to eat whatever I want, to live life to it's fullest.  We questioned the specialist after the follow up after the liver resection about my diet and beer...  she said "hell this is Wisconsin, go have a brat and a beer".  Of course I do not over indulge, but I enjoy a brat and beer every so often.  Getting back to the PICC line, I only had one, and it was in me for 48 weeks.  Never had to have it replaced or checked out.  It did give me a issue a couple of times, but never bad enough to have to replace. Also for my chemo treatments, I was in the oncologists office for 5-6 hours getting the cocktail, and left with a pump for the next 46 hours.  

 

My whole point to this is to give a little insight to all going thru this whether it is as serious or less serious as myself.  I hope to let anyone know that even though it is a stage IV condition or lower, never give up hope.  I never knew (probably best for me) what stage IV meant, nor did I care.  I just wanted to move on with my life.  I met a great woman in August of 2011, and she stuck with me thru the whole ordeal.  She helped with everythign flushing of my PICC lines, to packing my wound.  I did marry her this past August as a matter of fact.  I have never felt as good as I do now.  And I honestly can say I did not have a negative experience with anything I went thru.  the Infection/open wound wa a bit hairy, but I made it thru and with my beatiful girlfriend at the helping and pushing made the difference.  I am not saying I am a poster child for this, nor am I a hero... but I am here to help and talk about everything and anything about this whole ordeal.  I had a friend of mine get diagnoised with the same thing 1 week before I was.  He was going thru the same treatment scheudle, however he did not make it. He died from his issues 6 months after we found out.    I don't claim to have all the answers, or the correct ones however I do have answers for what I dealt with and went thru. 

 

I know this is a long read, and if you are still here after all that reading it means that you have questions, or I was able to answer them, or you went thru something similar.  I honestly encourage anyone of you starting to go thru this, have been thru this, are in the middle of this, or are a caretaker to ask me anything.  Again I am willing to answer anything and that literally means anything.  You want to know about the most embarassing or private moments or what to expect..  let me have it and let it be known that you will get an answer.  Please feel free to private message me, and I will get you my email address.  I do not check this site to often, and decided to check it out this afternoon after lunch.  I feel I might be able to give some hope, insight, and let you see the light at the end of a tunnel that many doctors try to paint. Hate to say it, but I HAVE been there and HAVE done that for the most part!

 

I am currently clear and now the oncologist has bumped me up to every 4 months for check ups.  Feels good about my progress and outcome so far!

 

Hope everyone is well, and moves on.  Pleae remember that most of this is aobut your mindset.  Never let it get you down. Live everyday as if you had no problems at all.  Never let it sideline you, or use Cancer as an excuse! I appolgise for any spelling errors as I was trying to get alot of information out while trying to get back to work.  I have left out a lot of stuff which I can and will share if interested!

LivinginNH

Hey there!

Well HELLO old friend!  Good to see you posting once again, and glad to hear that you're doing relatively well.  Oh, and my congratulations on your wedding!  You certainly don't need me to say it, but you have one very special lady there.     I'll keep this short tonight, I just wanted to say hi and to wish you well. 

All my best,

Cynthia

DD3

You sir

are a true inspiration to all.  Thank you for sharing your story...  God bless.

runriderecoverU

Diagnosed July 26,2023. Stage 4 CRC with mets to liver and retroperitoneal lymph nodes. 6 Rounds of FOLFOX with Avastin. Tumors are now resectable. July 2, 2024 I had an 8-hour surgery to remove multiple lesions on my liver as well as my sigmoid colon and gallbladder. NOW I'm afraid? You'd think I'd be jumping for joy but the Oncologists both say nope. Not yet. They both agree that I need more chemo. I'm waiting on the results of the latest CT and a Signatera test before I decide what I want to do.

I'm an active 58-year old and have run 169 miles since diagnosis. I've only run 44 miles so far this year, when my average is 520, but I'm incredibly proud of each of those 44 miles! I ride bikes and horses ( by the way, I went into my 8-hour surgery with a fractured leg caused by a horse—not recommended).

I appreciate you taking the time to write your story here. I'm going to remember it when I need hope.